Feeling the Need for Control Since My IPF Diagnosis

It is an understatement to say that being diagnosed with a chronic illness causes everything to feel out of control for a patient and their family. The loss of control tends to happen in two phases: 1) the acute phase, which is everything that feels out of control immediately following the diagnosis, and 2) the chronic phase, which is when a patient starts to feel like their disease is causing physical or mental losses and they strive to regain some control. At least, this was my experience after being diagnosed with idiopathic pulmonary fibrosis (IPF), a fatal lung disease for which there is no cure yet.

I had never really reflected upon or realized this need for control until it was highlighted by a fictional character in new movie about chronic illness. If a lung disease of any kind impacts you, whether it is IPF, Cystic Fibrosis, or COPD, I’d highly recommend the movie Five Feet Apart. The main character states that she has this need to control aspects of her life because her disease is uncontrollable, and this really resonated with me. I began thinking about the desperate efforts I’ve made to control certain things in my life since my diagnosis of IPF, and the ones listed below are just a few scenarios.

I was diagnosed with IPF on April 7, 2016, and the first few days following my diagnosis were a blur. I felt the need to control who could know about my disease and when they would be told. What I forgot to consider was what my parents needed, and that included telling a few people to ensure they had support while they were digesting this news.

I didn’t want a lot of people knowing that I’d been diagnosed with a fatal lung condition as a young adult, especially with no other health concerns, before I had accepted the news myself. I knew I wouldn’t have been able to cope with the sympathies, well wishes, or my friends treating me differently. This is the primary reason I felt the need to control who knew about my disease shortly after my diagnosis.

As I’ve learned to live with IPF for a little over three years now, I’ve experienced different scenarios where I have felt a need to be in control. In hindsight, many of these times have been in response to a loss caused by my disease. As an example, I’ve become possessive over some of my tasks at work, even if it might jeopardize my health, because I have realized other losses in the workplace as a result of IPF.

More specifically, IPF can cause memory and other cognitive struggles, likely due to the reduced oxygen levels in our bodies. I have expressed this difficulty in the past when I can’t grasp a concept at work, or when I need reminders about tedious details. My fear is that this deficit caused by IPF is going to force me to lose the parts of my job that I love, and as a result, I’ve become possessive of those tasks or resistant to change.

Managing my schedule is another primary example where I’ve felt the need to be in control since my IPF diagnosis. I used to have a very full schedule, one that was filled with volunteer and social commitments, which would keep me very busy, and now I value a quiet, less chaotic schedule. I like to be in control of my time as much as I can because I know that if I push myself too hard, to oblige by everyone else’s social events, I will compromise my physical health. Either I’ll need a day home from work to try and catch up on rest, or I’ll wind up sick with a cold or flu.

Due to this, I am very strict on writing out my schedule for the week, which includes time to rest or rejuvenate myself doing quiet hobbies such as crafting or reading. Admittedly, I don’t like when last-minute events pop up or when a social event changes—it tends to throw off my week. While I know I can’t always control these changes, what I can control is how I use my already limited energy throughout the week, which is why I feel it necessary to control my schedule.

I can’t help but wonder whether other patients feel an increased need to control different aspects of their lives since being diagnosed with IPF. Is this something you have experienced? Please leave a comment, as we’d love to hear from you! Join our community to stay in touch.

After being diagnosed with idiopathic pulmonary fibrosis (IPF) in April 2016, Charlene Marshall has made it her mission to support, educate, and share her experience of living with a chronic lung disease as a young adult in an effort to help others. She enjoys spending time at her family cottage, traveling the world, and all kinds of do-it-yourself (DIY) crafting projects. Charlene resides in Canada and has discovered a passion for writing in the past few years—something she never anticipated would be therapeutic for her—and building new friendships or offering support to others.

IPFF’s website including any and all content directly or by linking to a third-party website is for informational purposes only. IPPF does not provide medical advice, diagnosis or treatment. For more information click here.

6 Comments

Marianne Brooks
on October 16, 2019 at 6:43 pm

Great article Charlene! You are an inspiration to those of us living with this disease.

Thank you for your kind words Marianne! I consider it such a privilege to be a patient advocate for this disease. Even during my darkest days – and contrary to what might show up in my writings, there are many of these days – I think about the kind words to me from the IPF community and am so thankful. I appreciate your comment, and that you’ve taken the time to read my blog.

Thanks so much for reading my blog and getting in touch with us. Not too worry about donating, you take care of your needs. Managing this disease on a single / limited income is so difficult. Hang in there, and glad to hear my blog resonated with you a bit. Know that we’re here for you, thanks for writing.
Charlene.

I lost the Love of My Life because of my fear, anxiety and need to control my life after receiving my diagnosis. I pushed her away because I did not believe that she could understand what I was going through.

Thank you so much for reading my blog and leaving this comment – how courageous of you to share this with us, though I can imagine it may not feel this way to you. I remember the days after my diagnosis and how difficult they were so I hope you’re being gentle with yourself. Even if you aren’t newly diagnosed, learning to live with IPF is not for the faint of heart and can be so difficult; I am sorry the anxiety, fear and desire for control pushed your love away from you. This wasn’t something you did intentionally, these thoughts and struggles can be come so consuming of us. Please know that others are here who understand – while not the love of my life, I’ve certainly lost friends along this journey too because I am convinced they “just can’t understand”. And, while many of them can’t, many of them try and I need to remember this but it is so much easier said than done. Feel free to write me any time ([email protected]) … this disease can feel so lonely, but know that you aren’t alone. Sending you much love and thinking of you.